Hi there, I have finally been given a date to sort out the endo after 10 months of pain (even with Zoladex am in agony and pain meds don't work).

Had an MRI 4 weeks ago as they wanted to make sure the bowl was not 'attached' to my left ovary and it is not but very close apparently.

However when I saw the specialist the other month, am sure they said I would have a consult BEFORE they did next lap to discuss what course of action to take. It seems like everything has been taken out of my hands and they are doing what they want and not consulting me first.

I have a specialist nurse who I can 'email' and it was she who called with the the results of MRI but I have asked twice for written report of MRI and also emailed her yesterday to ask what operation they intend to do in January but not heard from either email.

Is this usual? My first Lap was an emergency so this is different to first time but I still feel I should be consulted about what they are going to do?

As I was told I cannot have children due to severity of endo I would rather have done with it all and get a hysterectomy as I do not want the Mirena coil (mum had one and she had to be hospitalised due to fibroids) so........ 😭

4 Replies

Hi I have had my bowel fused to my stomach twice now. They just removed it, they only found it by accident, the first time was during a lap and the second time was during a hysterectomy, I am on my second week of recovery after hysterectomy and I would say if you don't need one don't have it, when I asked why my bowel keeps fusing to my stomach I was told its one of them things.

I just had my 3rd laparoscopy 3 weeks ago and prior to that I explained to the consultant that I've had enough.. I was first diagnosed with endometriosis 14 years ago and have subsequently been in and out of hospital with them removing it when they seem to feel like it, so on this occasion I wanted a hysterectomy. Exactly like yourself, I can't have kids so why should I have to live with the misery day in day out. They decided to insert the marina coil instead and told me to give 6 months and see how I feel then.. there has never been one occasion where I feel that I have been listened to or taken in anyway seriously and not one gynea in all these years has actually properly explained any of it to me. I only came to understand the disease from joining support groups such as this. For the last 3 weeks I have been bleeding very heavily, I've been eating pain killers like sweets (they won't give me diaphene despite asking repeatedly for it) and basically feel like I have no right or control to my own body. I have no idea why they don't want to listen and just resolve it giving me some sort of chance of a pain and misery free life, but keep trying is all we can do!

I know only from my perpesctive. I am now 44...with two children. Did all they said to do.....only to see the same run around and "gee that's rare....sorry YOUR body didn't react like it should have". I'm done...only one doc....a GI specialist said that a hysterectomy is way overdue. I know....and I've done the research. Appointments this week for another colonoscopy and vag ultrasound. Actually afraid I'll get a blind technician. I'm a friendly person but seriously starting to get pissed. What's truly rare? A doc who will listen to what you are willing to do or not do. Keep us posted.....

Hi ther, yes will definately keep you posted and suzi_sko I feel the same: no one listens to you. I am going to try to be strong when go to pre op thing but.... Definately do not want the coil fitted 😖